Wednesday, February 18, 2009

Obsessive behaviour understood

Good morning! After the last few entries it should probably not surprise you that Ainsley is currently at my feet putting together a puzzle of Winnie the Pooh. Although I am amazed at her continued tenacity I must say that it is bordering on obsession. Yesterday she was home from school due to her strep throat. In the three hours that I watched her she must have put together about 15 puzzles. She did nothing else. I must admit though, based on the sense of pride that I can see in her eyes, I am almost as addicted to her success as she is.

On the business front I can tell you that things have continued to move forward even with the sickos at home. I guess that is the award one gets from waking up at 2:00 AM. There really is quite a bit going on right now. It seems like every time I turn my head there is yet another research issue to address. There are three that I am looking at right now. First, there is the ongoing saga of ABT-751 and Fenretinide. You may remember that this is the phase 1 trial that we have been trying to get going for almost 3 years. In fact, the NANT has had the protocol ready to go for over a year. The problem has been trying to get Abbot, the manufacturer of the drug, to provide the ABT-751. There have been many issues surrounding this ongoing drug saga and, unfortunately, it isn't like we can run down to the pharmacy to get the drug. There has been significant finger pointing over the years and now we have come full circle. I can list a litany of different problems that I have heard over the years but I must admit that the latest nonsense just irritates me more than ever. I am beginning to fear that this is one promising combination that will never make it into patients. It is disappointing. None the less, I will be making one last attempt to hopefully get the politics of this one straightened out - or at least understood. The problem remains that everyone is pointing a finger at someone else. No one will stand up and say that they are the reason that this trial is not moving forward. Chicken! So, it becomes very difficult to identify the source of the hold up and address it. It just boils my blood that this is not in kiddos right now.

Some other things I am the midst of discussions about right now are a new oncolytic virus study and the new 3F8 antibody study which will be offered through United Pharmaceuticals. The good news about this latter study is that 3F8 will now be available to some (refractory) patients outside of Sloan Kettering. The bad news is that I am not so sure about the quality of the study from a patient perspective. I have heard many different claims from many different parties and I am anxious to sit down and read the protocol and requirements myself. Regardless, I am happy that patients will have an option outside of travelling to New York or St. Judes for antibody therapy. Right now, they don't even have the option to have the ch14.18 study that Sydney underwent as the study has been halted, hopefully temporarily.

Well, as you can see there are several research irons in the fire and it does not even begin to get into the work I have in the NANT or elsewhere. It will be a busy, busy month on the research front.

Wow, it just occurred to me that this whole neuroblastoma research thing is just one giant puzzle. I am beginning to better understand my daughters obsession.

My purpose is part obsession, you know.

1 comment:

Zeynep Erden Bayazit said...

I don't know how you got involved in the NB research along the way, but it is so reassuring to know that there is a parent out there... Please, don't give up being obsessed.